A few months ago I gave a shout-out about Healthline’s invitation to share RA-inspired tattoos. I’m glad that they, not I, had the challenge of sorting through what must have been a dazzling and moving assortment of tattoos. Check out the top picks here: http://www.healthline.com/health-slideshow/rheumatoid-arthritis-tattoos.
After what seems like forever that I’ve been whining, I thought I would update the blog with some positive progress. One thing I’ve learned over the years is the truth in the statement, “This, too, shall pass” and many of the dispiriting things with which I’ve been dealing lately are, thankfully, on their way out.
- The insurance hurdles on my new RA drug, Actemra, have been cleared and I received my first shipment from the specialty pharmacy today. There was a mix up in the dosage amount (they sent me enough for a weekly injection rather than one every other week), so the good news is I have twice medication as much for the same copay. I will provide some updates once I start taking it and it has some time to start working. And hopefully this will also mean that I can start tapering off the prednisone.
- Physical therapy on my knee is almost over. My last appointment is tomorrow. I do think that it’s helped, which is a good thing. It’s also gotten me into the swimming pool for a workout either before or after my appointment which is even a better thing.
- I had the diagnostic procedure for the GI issue and things are about as good as they can be. There wasn’t anything horrible found and the issues I was having don’t seem to be related to my RA or other inflammatory diseases which is all good. I’m on a two-week course of medication to calm things down. At some point in the future if I develop issues again, I may need to have some corrective work done, but for right now, things are improving.
- The antibiotics seem to have cleared up the infected tooth I had.
We’re still facing some of my husband’s medical issues and work continues to be a bear, but there is a huge sense of relief each time one of these major things is resolved.
Thanks so much for listening to my whining and for all the great support I have received the last couple of weeks. There are many things for which I’m grateful and the virtual friends I’ve made through this blog are certainly at the top of the list.
I hope that whatever is on top of your list today brings a smile to your face. Thanks for checking in.
You would think that whoever is in charge of the universe would give people with a chronic illness a break and not complicate their lives with other major events. Instead it sometimes seems like the universe takes a certain delight in complicating the lives of those of us who already have their hands full just trying to make it through the day.
Such is the situation in which I find myself.
Because of elevated liver enzymes, I stopped taking my DMARD, leflunomide/Arava, in late March and the (count ‘em) eighth biologic I’ve tried failed, so I’m off of it as of the first of May. Basically the only thing standing between me and a major RA meltdown is 10 mg of prednisone a day – which has its own complications. I’ve been off the RA drugs now for six weeks and am waiting for the slow wheels of insurance precertification to grind its way to fruition to start one of only two biologics that I have yet to try. At least I saw my new drug, Actemra, listed on my specialty pharmacy website account so my rheumy’s nurse actually sent it in. No clue of when it might be approved and actually make its way to me.
In the meantime, I developed this icky gastrointestinal problem that sent me to the emergency room. A follow-up visit with my GI doctor has resulted in an upcoming outpatient procedure to correct the situation (if possible) or at least figure out what is going on. Interestingly, my GI doctor thinks that the issues may be connected to my RA because the start of the symptoms pretty much coincided with my going off of my RA drugs. I have a slightly different theory but the good news is I have doctors that take into consideration that I have RA and make that part of the overall mosaic of diagnosis and treatment that I receive.
In addition to these issues, working what has turned into a more-than-full-time job and running a household, I have physical therapy twice a week on my knee. The difficulties I’m having with my knee may or may not be related to RA and may or may not be improved with physical therapy. But I trust the doctor that ordered the physical therapy and I like my therapist and if there’s a chance it will help, I am happy to try. I was telling my physical therapist that I felt like I’ve got all the chainsaws, flaming torches, and sharpened swords juggled but if someone added so much as a ping-pong ball to the mix, it was all going to fall apart.
Sure enough, I got home that evening and discovered a badly infected tooth that led to an emergency visit to the dentist the next morning. The good news, I guess, is that I’m not currently on immunosuppressive RA drugs so my chances of getting this under control with some (painful) intervention from the dentist, a round of antibiotics and extra attention to oral hygiene for a week or two is pretty good.
When I step back, I know that all this, too, shall pass and I know unequivocally that, even with these bumps in the road, I have a wonderful life with many, many blessings. And I have heard it said that God doesn’t give us more than we can handle. There are just times that I wish He didn’t have quite so much faith in me.
I hope whatever is on your agenda these days are also blessings in your life. Thanks for checking in.
I’m pretty good at managing one medical condition, but I have to admit that keeping up with multiple issues makes me crazy with all the appointments and medications and tests, oh my! This is especially true because lately I’ve been extra busy at work and honestly finding time for all of this stuff has been pretty stressful.
I am currently doing physical therapy twice a week for my left knee and that will go through the end of June.
Then I had the liver enzyme situation which kicked me off some of my meds, including one of my RA meds. On top of this, when I saw my rheumatologist, she agreed that we need to switch to Actemra, but she indicated that since I had just gotten my labs done right before I saw her, that I wouldn’t have to do any more blood work. But she did say she wanted to get a baseline liver sonogram before starting the Actemra because of the liver situation.
I saw my rheumatologist on a Wednesday. When my rheumatologist’s nurse called me the following Monday, I just assumed it was to let me know that the insurance hurdles had been cleared in record time. Instead it was to tell me that apparently the doctor had changed her mind and decided I did need to do a full range of blood work. They wouldn’t even submit Actemra for pre-approval until the lab results came back, which basically delayed getting started on the new drug for yet another week. (I haven’t been on anything but 10 mg of prednisone for more than a month now.)
I also had the follow-up with my PCP after the ER visit for chest pains. He suspected that it might be GI/esophageal related and ordered an upper GI.
The blood work had to be fasting. The liver sonogram had to be fasting, but I could have water. The upper GI not only had to be fasting, I couldn’t even have water for at least eight hours prior to the test. In addition to RA, I also have Sjogren’s and without my medication, I get dry as the Sahara anyway, but add to that the fact that I couldn’t have anything to drink, I was pretty miserable.
But I got everything done on Thursday as the imaging office was in the same medical complex as the lab. I got there earlier enough to go get blood drawn first. Of course I was so dehydrated that they had to stick me three times and use a pediatric butterfly before they finally were able to draw the samples they needed. Then it was off to have my liver sonogram done (which was no big deal, just messy from the gel they use) and the upper GI.
The upper GI was at least interesting because I could watch what was going on and the radiologist told me what was he was observing and gave me the results verbally when we were done.
So by Friday, I had all the results:
- My labs came back pretty normal — at least to the point that my rheumatologist was willing to prescribe Actemra. One of my liver enzymes was still slightly elevated, but so greatly improved that we were able to move forward. However, I was somewhat aghast when I found out that the nurse (who I already was convinced is pretty incompetent) had never heard of the drug and was asking me what dosage she should order.
- The liver sonogram result was “fatty liver.” This is not great, but it’s not terrible either. It just underscores that I need to take a more serious approach to my diet and exercise.
- The upper GI came back completely normal with the exception of a tiny bit of reflux. The radiologist said I didn’t score 100% but I got an A-. There were no ulcers, hiatal hernias, obstructions, or cancer. This is all great news but now we still don’t know what caused the chest pains that sent me to the ER. I see another follow-up with my PCP in my future.
On top of this I seem to have developed an issue where I need to see my gastroenterologist but I can’t get an appointment for another month and I’m having war with my insurance company over a $70 charge for mail-order drugs that they show unpaid but my credit card shows that it clearly was.
AND my husband is having a medical procedure of his own this week which requires a day trip to the hospital and rest for a day or two afterward, so in addition to my own issues, I am helping support my husband’s situation.
I don’t know. It seems like my entire life is wrapped up in dealing with medical issues these day. I know that all this will be resolved in the near future, but at the moment it’s a bit difficult to manage it all and still keep a job and a household intact.
I hope whatever you’re juggling these days are happy things and not flaming chainsaws. Thanks for checking in.
As you may know, I’m pleased to be associated with Creaky Joints and their Joint Decisions initiatives that provide so much valuable information and resources for people with RA and similar chronic and inflammatory joint diseases (see www.JointDecisions.com).
On Wednesday, June 3, Megan Park (well-known for her role in “The Secret Life of the American Teenager”) disclosed that she lives with RA and has partnered with Joint Decisions to help raise awareness of RA and further Joint Decisions’ goals to empower and educate those with the disease. She will be featured on Joint Decisions’ first web chat of the new season, “Unlocking Energy: Understanding the Important Role of Movement and Nutrition in Managing your RA” on June 15. (The full schedule and a registration link appears below.)
Joint Decisions has a crack website team that created a “content capsule” that would have allowed me to include some really cool information from their site. What they didn’t count on was that, even with a tutorial, I apparently don’t have the technical ability to embed that content in my blog, so please visit www.JointDecisions.com to see all the exciting things they have going on and avail yourself of all the great resources and information there.
This season’s Joint Decisions web chat line up:
- “Unlocking Energy: Understanding the Important Role of Movement and Nutrition in Managing Your RA” on June 15, 2015 at 7 p.m. ET / 4 p.m. PT (featuring Megan Park). Register here: https://event.on24.com/eventRegistration/EventLobbyServlet?target=reg20.jsp&eventid=993278&sessionid=1&key=4A76C4F0C30E297AFE0110BE77BB9989&sourcepage=register
- “Shaping Your Story: Managing the Mental and Emotional Challenges of Life with RA” on August 5, 2015 at 7 p.m. ET / 4 p.m. PT
- “Creating a Strong Foundation: How to Build Your Care Team and Enlist Supporters in Your RA Journey” on September 24, 2015 at 7 p.m. ET / 4 p.m. PT
- “Real Talk: Breaking Down Barriers in Patient and Rheumatologist Communications” in early November
Thanks for checking in.
I don’t know why but I’m always surprised when something is wrong with me that’s NOT associated with RA. I mean when my liver enzymes went crosswise, the first thing that happened is that my rheumatologist took me off one of my RA meds.
But we’re actually people first then people with RA second, so sometimes stuff happens that also happens to “normal” people.
I was minding my own business, driving to work one morning last week when I started having chest pains. First it just felt like I had tried to swallow something and it got stuck halfway down (right behind where my heart is). Then the pain blossomed throughout my chest and up my neck under my jaw. It would lessen, then it would come back stronger.
I was driving east toward a major highway. When I hit the highway I had to make the decision of whether to turn north and go to the office or go south to the emergency room. I switched lanes about four times. The pain would come back and I’d move over to the lane to turn south. Then it would lessen and I’d think I was stupid and get back in the lane that would take me north. Finally I got to the intersection and had to make a decision. I decided that if my husband were having these symptoms I would tell him to go to the ER, so I took my own advice and turned south toward the hospital.
I called my husband who stayed on the phone with me as he headed toward the hospital to meet me. (We have those neat Bluetooth, hands-free phone things that let you talk on the phone without taking your hands off the wheel.) My husband suggested that I pull over and call 911, but I pointed out that by the time the ambulance could reach me that I could already be at the hospital. I did finally reach a point on the highway where I could pull off to the access road where I could pull into a parking lot if I felt like I couldn’t drive any more.
I got checked into the ER immediately and whisked back to a treatment room where a flurry of activity took place almost all at once: an IV started and blood drawn, hookups for an EKG and heart monitor, and a chest X-Ray. My blood pressure and heart rate were all over the map. The doctor came in and checked me, then the nurse came in with drugs. They administered morphine as a vasodilator which reduced my blood pressure, Zofram for nausea, then, as a precautionary measure, nitroglycerine and an aspirin.
Four hours later they finally released me. Everything came back perfectly normal.
I know, that’s good news, right? But it’s hard to go through all of that and be “normal”.
So I had a follow-up appointment with my PCP yesterday. He suspects a specific type of esophagus spasm. One of the common causes/triggers of this is a hiatal hernia, so I get to go in next week for an upper GI. (Can you say barium milkshake?) I was already scheduled for a liver ultrasound because my liver enzymes (while better) are still not where they should be and my rheumy wants to get a baseline before we start Actemra. At least I was able to schedule the two appointments back-to-back so I only have to go to the imaging center one time (and only fast once!).
So it wasn’t RA and (thankfully) it wasn’t a heart attack. But honestly, I really don’t want any new health issues in my life at the moment. Sigh. Fingers crossed that the liver test comes back good and that they find something really, really simple with the upper GI.
I hope that whatever excitement you have in your life today doesn’t involve the emergency room. Thanks for checking in.
Well, I’m sort of still on a drug strike. Temporarily.
I had my follow-up with my rheumatologist yesterday and we revisited my treatment plan. She actually wasn’t cross with me for staying off Kineret once I returned home from Europe and got over the crud.
As noted before, I’ve been through all the biologics except for Rituxan and Actemra and, after some discussion, she is prescribing Actemra. This is an Interleukin-6 inhibitor which I haven’t tried before so I am hopeful that this may be the “magic” solution that will not only be effective, it might actually last. Additionally, the drug is administered either via injection or infusion and she allowed me to choose my preference of an injection rather than infusion. Kineret is a daily injection, so it will be nice to go back to a once-a-week schedule rather than having to do daily pokes. (Four injections a month vs. 30 injections. I mean really, how great is that?)
Of course, now I have to struggle through all the insurance pre-approval circus (yet again), so who knows when I might actually start on the drug. The fact that I’m still on 10 mg of prednisone so am not feeling horrible makes me a bit more patient about it.
Hopefully everything will be approved quickly and the self-imposed drug strike will end on a happy note.
I hope whatever is new in your life today brings a smile with it. Thanks for checking in.
Occasionally I like to go back and reread some of my older posts. This is one of my favorites.
As I cruise the various blogs about RA, I see a lot of discussion about “visible signs” and “use of assistive devices” along with the omnipresent “invisible disease” conversations. On one hand we tend to rail against those who don’t understand that even though we may not look sick, we have a chronic, debilitating, incurable condition.
On the other hand, however, we tend to view those visible signs of the disease — crooked fingers, using a cane — as a sign of defeat, a sign of disability. We really don’t want our disease to become visible.
I think part of this is that as long we, ourselves, don’t see these visible signs, it’s easier to ignore the fact that we have the disease. Let’s face it, particularly in the US, the image is of youth, energy, and health. That, more so than a house with 2.5 kids and a dog, has become the American dream. Anything less makes us a second class citizen and most people with a disability in this country will tell you that’s exactly how they’re treated. And if you want to talk about being invisible, well, just have a conversation with someone who is physically challenged.
When I had my hip replaced in August 2008, I had to use a walker and then a cane for a period of time. I can tell you that I was, indeed, treated very differently when I went out in public with these devices. However, for me it wasn’t a problem because, guess what, I was RECOVERING from surgery. I wasn’t disabled. I was merely temporarily inconvenienced and I would get better and put away the walker and cane — or perhaps donate them to someone less fortunate who needed them. Not me. This was TEMPORARY. (I must admit to using the “helpless me” on more than one occasion to my advantage during this period. And in Dallas, a handicapped parking sticker is worth its weight in gold. Enough said about that.)
The problem with RA is that you don’t recover. It’s not temporary. It doesn’t go away.
Assistive devices, as Rheumatoid Arthritis Guy (www.rheumatoidarthritisguy.com) tells us, are not limitations, but empowering tools that let us more easily accomplish what we need to do. They help us maintain our independence and our dignity. The difference between my hip surgery and RA, is that once I start using a cane or other device, there is no road back. The invisible illness becomes a visible disability.
This is a transition that is as emotionally charged and personally defining as going through adolescence, or going through a divorce or death of a spouse. Suddenly you’re not who you were yesterday, and you’re not going to be that person ever again. You’ve added a new adjective to the way people describe you. The “D” word.
I’m not there yet. Even with medication, however, I expect to be there one day. Hopefully years from now, but one day. I’ve had some practice since I’ve used assistive devices in the past, so I’ve lost my fear of using the handrail, picking up the cane. But there are many more who haven’t had that advantage.
I would love to hear from others who have made that transition. Can the transition be a metamorphosis into a butterfly — that moving more slowly gives us more of life?
Thanks for checking in.
I consider myself a good patient. I bet if you took a survey of my doctors and asked them if I am a good patient, they would also check that box. A significant credo in my life is that a treatment plan won’t work if you don’t follow it. After surgery I have rested, iced, exercised, strengthened and physical therapied myself back into shape. For RA, I have swallowed pills, exercised, X-rayed, and watched my diet. I have also injected once a month, once every other week, once a week, and once a day as well as suffered through hours-long infusions that did nothing more than left me with a headache and nausea.
But I am also an active participant in my health care and, at the moment, I am
actively NOT taking my biologic.
It didn’t start out that way. At the end of March, my rheumatologist took me off leflunomide (Arava) because my liver enzymes were elevated. When I saw her in mid-April before the trip, she started me on 10 mg of prednisone to keep me going through our vacation. I was hopeful that she would also switch me off the Kineret, which is a daily injection because (1) I really didn’t think it was working anyway and (2) I really didn’t want to babysit 14 pre-filled syringes all over Europe. But she was reluctant to take me off both leflunomide and my biologic without a different treatment and she didn’t want to start a new medication right before I left the country for two weeks. So off to Europe I went, still on the Kineret.
Things went pretty well until one day in London there was a mishap with the mini-bar fridge where I had stored my Kineret. The remaining syringes spent at least 12 hours being warm which is not what you want to have happen to a biologic that’s supposed to be kept refrigerated. That event coincided with the fact that I was getting sick so I made the decision just to forego any more Kineret until after I got home. Either it wouldn’t work because it had gotten warm or it would work and I would potentially get even sicker because my immune system would be further compromised.
So since that time (a little more than two weeks ago), I’ve taken nothing for my RA except for 10 mg of prednisone a day. I did refill my Kineret prescription when I got home. And I’m pretty much over the crud I had. I just can’t seem to get motivated to restart the Kineret. I don’t think it’s working for me and frankly, I hate the daily injections. The prednisone seems to be enough to keep the inflammation generally down and the flares at bay without being strong enough to interfere with sleep or produce any of the other noticeable side effects.
So here I am, Ms. Poster Child for patient compliance being on strike against taking my biologic. Not exactly an earth-moving revolution, but for me, it’s a pretty significant step.
I don’t know that prednisone is a long-term solution. While I love all the good things it does for me, it has a very dark side. But I’m down to two biologics that I haven’t tried yet, Rituxan and Acterma. Given the choice, I’m not sure I wouldn’t just rather ride the prednisone wave a bit longer.
I see my rheumatologist in about 10 days. My plan is to stay off the Kineret until I see her again. Then we’ll see what comes next and whether I can regain my “good patient” status.
I hope whatever revolt you happen to be leading at the time is a huge success. Thanks for checking in.
Don’t you just love it when you get a sneak peek at something great? Or perhaps learn a wonderful secret before anyone else? I’m feeling that way now after spending some time with Joe Coe and Dr. Ben Nowell of Creaky Joints.
It’s no secret that I’m a fan of Creaky Joints and all the advocacy they do for people with rheumatoid diseases and I feel privileged to be associated with their Joint Decisions team. But I am really, really excited about Arthritis Power, their new arthritis research initiative. Okay, let’s face it. I’m in favor of research into RA because the more knowledge there is, the better chance we have of finding a cure. But not all research projects are created equal. I love this one not only because Creaky Joints is involved, but because the patients who participate in the research get so much back! And yes, the Creaky Joints team has partnered with the outstanding folks at the University of Alabama in Birmingham, so there are some top-notch people behind the initiative as well. But did I mention how great it is for the participants? (Oh, right, I did, but it bears mentioning again.)
The research is done either through your computer (at the moment) or mainly (coming in May!) an app on your SmartPhone. It tracks five key areas: Pain interference, physical function, sleep disturbance, fatigue and the RAPID3 general health assessment. But not only do they gather this information for their research, you get reports back that let you track this data over time, either for your own use or for sharing with your care team. In addition, you can enter your current drugs/treatments and those are tied in. I love it. It’s not research that sits on a shelf somewhere, it collects information that you can actually use.
One of the things that I love about it is how accessible it is for everyone. Even though the survey is highly scientific, it’s written in very clear language and is easy to enter and navigate (a few clicks of the mouse on the computer).
Obviously, the more participants there are, the better the research, so I’m giving you a heads up that YOU NEED TO SIGN UP FOR THIS. (Sorry, was I yelling? Let me just say that again: YOU NEED TO SIGN UP FOR THIS.)
The one catch? It’s not quite ready for prime time yet. I was given a sneak peek in to the “early access” site that still has some “quirks” and the real launch will happen in May when the smart phone is launched. But if you want to go look now, the link is https://www.creakyjoints.org/arthritis-power/#share.
Be aware that you will be asked to read/sign some consent forms because this isn’t just an ordinary website, this really is serious research so Creaky Joints needs to be sure things are legal. If you’re already a Creaky Joints member, it’s a bit quicker because you can just link to your existing profile. And if you’re not already a Creaky Joints member, you should take a look around the site and see what you’re missing.
At any rate, I hope you’re excited about this research initiative as I am. (And if you’re not, you should be!)
Thanks for checking in.